Don’t Repeal the Affordable Care Act! Lifesaving Medicine Should Not Depend on Wealth. (a plea to Republicans to choose lives over politics…)

Yesterday I picked up Mitzi at the end of an afternoon with friends. In the car, while she snapchatted, I was listening to NPR as they reported on the efforts by the President-elect and the Republican party to repeal the ACA. I didn’t know she was listening until we got home and she made me keep the car running so she could listen until to the end of the report.

Yesterday, nine days after she turned 15, she realized that if the ACA is repealed, she could die, because of this little pre-existing condition that insurance companies might not approve.

She is terrified that, because she has type 1 diabetes, some day, health insurance won’t be available to her. Because, pre-existing. And without that coverage, she will die. 

Mitzi was diagnosed at age 8, and yesterday was the first time she ever said out loud that diabetes might kill her.

But not the disease in an of itself, but because her life-saving medicine would no longer be covered.

Before you scoff, realize this — until the Affordable Care Act (aka Obamacare), many insurers denied coverage to those who needed it the most, even (or especially) for pre-existing, life-threatening illnesses. (Because, high cost to them, you know, to cover medicine that saves lives, as opposed to the low cost for people with no existing conditions who don’t need life-saving measures or medicines.)

I know ACA is not perfect. I know that. But until there is a program in place that ensures coverage for those who need it the most, please please please speak up to your senators and representatives and  to insist that ACA not be repealed — or even modified —  until another plan is proposed, vetted, approved, and in place.

I have a 15 year old daughter who should be focused on school, friends, sports, music, books, and figuring out how to grow up. How to continue to be a leader. How to continue to care for toddlers as a camp counselor and babysitter. How to be a better field hockey player. How to record her music. How to live her dream of being in the FBI or being a high school teacher.

Instead, she is now worried that she is going to die before realizing those dreams, because her government just pulled her medicine from her — without insurance, staying alive will cost her thousands of dollars each month which is likely out of her reach.

So, GOP, Paul Ryan, Donald Trump, all of you — mine is one kid out of thousands, one story out of millions. Edit, adjust, change the plan if you must, but it is immoral and unconscionable to repeal the ACA without an alternative in place.

Lives depend on it.

I mean, they actually, not theoretically on paper or on a chart or in a tweet somewhere, real lives actually depend on this.

Stop. Put lives ahead of politics and the whims of a novice politician. Consider. Be thoughtful. Be thorough.

Or people will die.

 

People

will

 

die.

 

 

On Special Needs Advocacy, Diabetes, and Ignorance

Wow, I haven’t blogged in quite a while. So much has been going on that I haven’t kept up with it all.

I’ve spent much of my time in the last couple of months helping my husband with his campaign for re-election our town’s School Committee, on which he served for the past six years. Elections can bring out strong passions, and usually candidates are supported (or opposed) on just a few issues.

This election was no different, and over the course of a few weeks it became clear that one issue on the table was advocacy for children with special needs — and that people didn’t believe my husband wasn’t a good candidate on this issue. When, on a local forum, it was pointed out that as a father of a daughter with special needs, Ray felt personally invested in the cause and has advocated for years, this assertion was dismissed by the original poster, with a “pfff, his daughter has diabetes, and so what that he makes sure a nurse accompanies her on a field trip, that’s whatever.”sad girl

I held my tongue then, but now that the election is over and my husband lost his bid for re-election, which I believe was in no small part because of this issue, I am going to speak up now. Loudly. Clearly.

Diabetes is not “whatever.”

Diabetes is more than a nurse on a field trip (though that’s nice, because, you know, life threatening stuff).

Diabetes is a medical condition that can, and does, affect a child’s ability to think and learn.

Signs of high or low blood sugar (hyperglycemia or hypoglycemia, respectively) vary in different children. Symptoms of low blood sugar can include feeling shaky, blurred speech, headache, sweating, tiredness, dizziness, hunger, and changes in behavior, and these symptoms may progress to severe hypoglycemia, which causes loss of consciousness and seizures. Symptoms of high blood sugar may include increased thirst, increased appetite, increased urine, tiredness, blurred vision, and, if ketoacidosis—a life-threatening condition caused by a lack of insulin that forces the body to use fat as an energy source rather than carbohydrates, which in turn releases acidic chemicals known as ketones into the blood—develops, symptoms may include extreme thirst, rapid shallow breathing, nausea, vomiting, abdominal pain, and even a fruity odor. — Desmond Schatz, M.D., quoted from the Juvenile Diabetes Research Foundation

Now, imagine trying to think and learn at school while suffering these symptoms.

Diabetes CAN and DOES have an impact on a child’s ability to function and learn at school.

This is why, for years, parents of children with diabetes have had to fight to make the science understood, and to insist schools accommodate these children and support them equitably. We’ve had to do this because diabetes is dismissed as a “whatever” medical condition.

This is why every year my husband and I sit down with nurses and counselors and other school staff, to craft carefully the words to ensure these accommodations are met, and that my daughter is not dismissed by next year’s teachers as “whatever.”

This is the same fight parents of children with other special needs have also been fighting for years and years.

The needs are different, but the fight for parents is the same, to advocate with science on their side:

That the child with ADHD isn’t just being a troublemaker.

That the child with executive function disorder is not simply sloppy and disorganized.

That the child with dyslexia is not stupid.

That special needs children just need to be understood and helped be the best students they can.

We have been fighting this fight since our daughter’s diagnosis. Because even after all the science and exposure and explanations and advocacy, some people, like that person (or persons) in my town don’t understand what life with diabetes is like.

My husband lives with his daughter’s diabetes every day, and because of that, has always worked hard to make sure that other children with other special needs get the support and advocacy they deserve. He wants for them what he wants for his daughter. He’s fought for them as he has for her.

And to that person on that one local town political forum, I just want to say, your ignorance was sad and painfully clear, and you did exactly what you accuse others of doing to you and your children — not understanding or supporting families with special needs children.

Discriminating. Judging. Dismissing.

Shame on you.

 

 

Back-to-school brings scissors, pencils, cliques, and other sharp things

It’s mid-August, finally, and many schools in our country are back in session. In my neck of the woods, however, we still have a month to go before that first bell. There are beaches to visit, day trips to take, ice cream to scoop, camp-outs to plan, and all kinds of lazy days spread before us like a month of red-checkered picnic blankets.

Still, it’s mid-August, and while that means the summer’s last hurrah for the next few weeks, for many parents, it also means thinking ahead to the upcoming school year. In my house, we have summer reading (and notes) to finish, as well as math homework (yes, you read that right, we have math worksheets). Amid all the catalogues and online ads and social media posts of faraway friends’ kids having first days of school — first weeks even — there has been this gnawing thought.

What will this year look like for my kids?

Honestly, I’m not concerned about academics. It’s not that my kids are so brilliant. It’s just that I can handle helping them with schoolwork. It’s neat. It’s predictable. Sure, it’s often a challenge at one time or another, but it’s manageable.

What I wonder is what the year will look like for them socially.

talking behind backUndoubtedly it’s my own baggage that makes me feel this way, year after year. I had some struggles in middle school, sixth and seventh grades in particular, when both years found me an outcast for some alleged insult to a friend. (Yes, both times a friend heard a rumor I’d said something that I didn’t say, and suddenly no one in the grade spoke to me for months.) I remember this keenly, and have always been on the lookout for my kids. Are they happy? Making friends? Being a good friend? Enjoying school? Enjoying after school?

It’s usually a case of “so far, so good.” I don’t care about popularity and I don’t care about numbers. I think it’s okay to not be friends with everybody, but I try to teach my kids to be kind to everyone, even if they don’t want to foster a friendship. What I do care about is that each of my children has one or two good connections, true connections, honest and mutual friendships, to count on.

This year, I’m not so sure what to expect. This year, I have my doubts, and also my fears, about what back-to-school will mean for one of my children in particular, because for the first time, in the last few months I have witnessed some genuine Mean Kid behavior. Straight out of a Disney Channel movie.

The first incident happened at the end of the school year. My kids and I were walking to a nearby soccer field for someone’s game. Our route took us through the neighborhood across the street, a neighborhood filled with families and kids, many of whom are friends on some level with my kids. We rounded a bend and I saw them, the three peers of my child, stopped a distance away, chatting. My nerves got edgy; these kids are only peers, not friends, though they friends were at one time. But not any more, as far as I could tell by the sudden lack of phone calls. The were No Longer Friends.

We walked on. The trio walked as well, but stopped every once in a while to chat, or look at a phone or a flower. They saw us; I saw them recognize us. Yet no one spoke, not them, not my kids. Finally we were near enough when I could use my Mom/Teacher voice to say, “Hey there, Name, Name and Name!”

No one answered. By now my blood was a little hot. Never in my wildest dreams would I have imagined any of these kids (I know their PARENTS!) ignoring an adult. But ignore me they did. We closer still, until we were a few steps behind, and we all finally had to turn onto the single-file path through the woods, a cut-through to the fields. One of my kids was on a bike, and wobbled slowly just behind the ahead-walkers, and still no one spoke. As the path widened, my bike-rider shot past them, as did my kid, the peer and former friend of these three, and still not one spoke. Not to that child or the siblings, and not to me. And I thought, “What the what?” and “So it begins.” whisper1

Fast-forward a few weeks, to summer vacation, the local pool. Neighbors, friends, peers swimming, enjoying the hot July sun. They were there again, peers of my child, though not all three, but some, with another in the mix. At one point I gave the kids money to get some overpriced treats from the snack bar. Kids’ peers were perched at a picnic table, slurping on Italian ice. My kid walks past them. One says hi to my kid, brightly, friendly. My kids says hi back, equal in tone. Once she’d passed entirely, with back to them, that peer turns to the group, says something, they all laugh, harshly, glancing at my kid before laughing some more. Again, I was caught off-guard, again I was shocked, embarrassingly so, because one new group member, I’d thought, was my child’s friend. I wondered when that had changed. And how.

Fast-forward to today. Same pool. This was not witnessed first hand, but told to me by one of my other kids. Above scenario, almost to the detail, except one or two of the Other Kids had been replaced by one or two more. Same hello. Same whisper. Same laugh. (Apparently, my child who shared the story spoke up, called the Other Kids out, and basically got a “whatever.” Same child hugged his sibling, and said the Other Kids were a bunch of jerks. I had to kiss them both.)

My child shrugs off these incidents when they are mentioned. My child is kind and forgiving. My child calls them still calls the Other Kids friends. My child is an optimist, always able to see the good side of any situation, of most people.

And even as my child shrugs, I see the ghost of confusion in the corners of the eyes. Even as my child is too proud to acknowledge the insult, I see the flash of hurt, quickly replaced by a smile. Even as my child would never say something bad about a peer, I see the slash, ever so slight, in the layers of the skin.

We talk, and we don’t talk. I speak in circles, mining for the heart of the matter, edging closer. I have to be careful; the ground is very unstable. Too much, and it will all cave in, closed off forever. This is how we progress. Talking, listening, subject changing, whispers in the dark of things that are too raw to say in the light of day.

School starts in a month. These peers, and others, will be omnipresent; it is a small town.

I wonder what September will bring for this child. Re-connecting with true old friends? Finding new friends? Real Friends? I don’t know.

But I will bring all that I have, including the sized-for-the-soul Band-Aids that, for the first time, I fear my child will need.

band aid heart

 

 

 

 

Beyond Folklore — When a 13 Year Old Googles Family History

It never occurred to me that any of my kids would reach beyond family folklore to learn about their history, but I guess in this age of technology and immediacy it was inevitable.

This past weekend, Mitzi Googled her great-grandfather, Tony Mottola, and printed out about 2 dozen pages of condolences and comments from a Frank Sinatra forum after news of his death in 2004, written by folks who were huge fans of my grandpa.

I mean, I know how much he meant — to us, to music — but for the first time, I think my daughter understood that Papa Tony was actually and for real a legendary guitarist. Not just the person who made hand-lettered signs on posterboard for her arrival at the house on Lenape Island in New Jersey, and always had a balloon for her, and the living room always had a spinny chair to ride until it made you nauseated, and always, always there was some candy in a thick plastic container on the living room table.

She might have learned that he was not just the person who was married to Grandma Mitzi (yes! who my daughter was named for!) who had far fewer pages of condolences when she died in 2009, but impacted everyone she met. My daughter might have learned that he was not just the great-grandpa who had a set of chimes on the living room table and some thick-fabric mallets to play them with — though maybe now she knows that those oh-so-old chimes (now at her great aunt’s house) played the NBC (oh, let’s call it a ring) tone, and maybe now she knows that the house on Lenape Island had those chimes because her great-grandpa for years played in the Tonight Show Band on NBC with Johnny Carson, and was more than once a featured performer on that show. She might have also learned that weird fun fact that Lenape Island, where my grandparents lived, was shaped like a guitar. (FOR REAL.)

I don’t know what happened to those printouts, but I suspect they are tucked away in that special space in her room that 13 year olds are likely to have, to be looked at from time to time. Next week, next year, years from now? I like to think that some day, her son or daughter will find them and ask, what? And Mitzi will tell a story. Then another. Then they will be stories of his love for grandma, for the first Mitzi, and all she was, without the fame and the albums and the fan sites, the stories of family and home and love, with Tony and Mitzi and their kids, one of whom became my mother, Mitzi’s grandma, and the other three children, my aunts and uncles, my cousins, their children, and all of our stories, and then there will be more learning, more stories, more memories to be tapped, written into heartbeats, hugged into matter. And, yes, there will be that thing about Papa Tony being a famous guitarist and all of that, but by them my Mitzi will have learned what my siblings and cousin knew but didn’t realize until we were grown up — that for all the fame and recognition, what Tony and Mitzi cared about the most was family.

And eventually, what my daughter (what all my kids will tell), what my first-born will tells her children will be all the stories that she can think of, balloons, candy, love, family, and all the small details she is finally starting to hear and remember, the stories that are the foundation of our family, which no one but us cares to document on any site able to be Googled.

Are there more stories? You betcha. On beyond Google, this family’s history awaits my children, and those that follow.

Those tucked-away printouts? Just the beginning.